Tuesday, December 22, 2009

One of these things is not like the others

We spent last Saturday in Dayton visiting with David's extended family and having an early Christmas celebration. The hustle and bustle of the season has already started to wear Sumner thin, and we're not sure if it's a need for another intensive "burst" of therapy, or if he's on sensory meltdown right now. Honestly, Jack's not much better.

We got to D's great aunt's house and immediately Summy started into meltdown mode: people he wasn't all too familiar with, cousins who had noisy toys, a new locale, and a dog right on his eye level. He pretty much freaked.

One of David's VERY distant family members looked straight at me and said "what's wrong with him?"

Now granted, no one likes this lady, who I'm not even sure how many "removed" titles it would take to relate her back to my husband. But I immediately replied "he has issues, he has special needs."

This particular person spent the rest of the night yelling at Jack and Summy and alternately shaking her head at what I am sure she could only deem to be "babied" children who had meltdown after meltdown. Maybe I've lived in a bubble all this time, but we've never encountered someone so blatantly against our children. At least that's what it felt like. Sadly, this woman works during the day at a daycare taking care of what she refers to as "her bitches." *shudder*

Part of me was mad that I didn't have a witty comeback to roll off my tongue in her direction. Something like "what's wrong with you?" would have been great.

All in all, it made me so sad. The boys stood out like a sore thumb, particularly Summy. I felt defeated. Merry f'n Christmas.

14 comments:

There is nothing "wrong" with your boys they are very special kids who just have different needs and there is nothing wrong with that. There is something seriously wrong with her if that's what she refers to the kids in her daycare as and if she can't open her eyes to see that the boys were just in a new situation that threw them for a loop. I hope Christmas is much more enjoyable for them.

Ugh! If she is so distant I would talk to the fam about 86in her A**! I hope things improve. Don't sweat their behavior too much. They are 2. The boys have moments of pure psycho-ness that I am sure rivals any of sweet Summy's meltdowns. I know there are bigger issues at hand and please don't think I am trying to simplify them I just wanted to let you know we have all had those sweaty parenting moments, as I like to call them! :) Keep your head up!

SO sorry you had such a bad experience. Cutting/pasting one of my favorite poems. I used to share this with the parents of children I did therapy with when I was still working as a social worker. You may have seen it before, but it's worth repeating. ------------------------------

WELCOME TO HOLLAND

byEmily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.------------------------------Sorry for the long comment. HUGS to all of you!

Honestly...they have SPD and they are also 2! I feel sorry for your "relative's" kids that come into contact with her. Honestly...good for you for standing your ground and explaining what was going on. HUGS!~Elyse

Argh - many relatives never "get it" regarding sensory issues. Just stay away from that lady next year if possible.. spread the word of what she said and that's it's not acceptable.. maybe she'll be uninvited we can all pray. We are happier sticking closer to home -- I hope your Christmases evole into something intimate for your own family. Sometimes SPD or autism can make changes to a family dynamic that ends up making your family life more tight knit - at least that's what I found.

i don't think i've dealt with anyone/thing THAT blatantly rude and ignorant about my boy (who has ASD), but i do know that feeling with such empathy that after reading this i long to call and chat with you on the phone. :o)it sucks when people are that incredibly lame, but we can sit back and feel so much better knowing that we are experiencing our lives with so much more enlightenment and flavor!this is my first time reading your blog (via Shannon Des Roches Rosa), and will definitely be back.cheers.

I'm a friend of Shan's who saw the link on her FB page. I would just explain the sitch: "They were born at 32 weeks, 4 days. They have a sensory processing disorder. This situation is taxing on them and they are coping the best they can. If you'd like to be a part of the solution for them today, I'd be happy to give you some hints."

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The story of how the tader tots came to be

When I started this blog, I originally thought it was going to be a taderbaby...we chose the nickname after the delicious spuds served at Young's Jersey Dairy...but quickly found out it was tader tots! At 28 weeks gestation my placenta started abrupting and I was briefly hospitalized, then put on strict bedrest. At 31w 4d I was let up for an hour a day. At 32w on the dot, I was re-admitted for bleeding and began a four day fight to stop labor which I lost on 2.15.07 when Jack's placenta abrupted fully. If I hadn't been at the hospital, we wouldn't have made it. Upon birth, Jack's apgar was 3. The boys spent 4 weeks in NICU and this is their story, and mine.